How Black Women Are Disrupting Death Care in the U.S.
Melissa Harris-Perry: I'm Melissa Harris-Perry, and this is The Takeaway.
This week, the world reached a grim milestone, 6 million dead from COVID-19. So many lives lost, so many left grieving, friends, family members, neighbors. Once a taboo subject, the pandemic has now forced so many of us to reckon with death, and some more than others. Throughout the pandemic, Black people have had higher rates of COVID-19 cases compared to their white counterparts, and they've been more likely to experience severe or fatal cases of the virus. Systemic health, economic and social inequities, all have contributed to this disproportionate death rate.
For more on the intersection of race and death, I spoke with two people who think about these topics a lot.
Joél Anthony: My name is Joél Simone Anthony. I'm also known as The Grave Woman.
Alua Arthur: My name is Alua Arthur, and I am a death doula, a death educator, and the founder of Going with Grace.
Melissa Harris-Perry: I asked Joél how she got into the death care industry.
Joél Anthony: I like to compare it to animal magnetism, how some people just attract certain things and certain people. I consider myself to have morbid or mortuary magnetism. I grew up with an uncle who worked in death care for most of his life, and I spent as much time with him at the funeral home as I could growing up. I also used to help my mom and members of our church through what they call the Missionary Society, which basically was a group of women who supported members in our community as they were transitioning. I've been around death and dying my whole life, and that curiosity turned into a career.
Melissa Harris-Perry: Joél, in some ways, all of us have been around death and dying our whole lives, in the sense that if you're in any kind of intergenerational community, there are experiences of death, but it does seem so frequently that we try to protect or separate children from it, encourage children not to think about it, or we make up stories and narratives about it, in order to presumably ease how children experience it.
I'm interested in the idea that as a young person, you were not only around death and dying, but able to actually enter into the process of what it meant to bear witness to engage with that final transition.
Joél Anthony: In my culture, death and dying is not kept away from children. It's very blonde, it's very in our face. A lot of it is from the religious perspective of we leave our physical bodies and go to heaven or the next room, but throughout my career, I've noticed that people don't have conversations, or honest conversations with children about death and dying. It's always an anthropomorphic version of death. It's never this person's no longer here. I'm very grateful to have had the experience of being in the sacred space of the dying and the dead.
Melissa Harris-Perry: Alua, tell us a bit about your journey and how you even discovered that death doula was a thing that you could be, and then how you made the choice and your journey into becoming a death doula?
Alua Arthur: Gladly. Let's see, I started my professional work as a lawyer. I worked at legal aid where I grew terribly depressed, and took some time off to see if I could heal this depression, and went to Cuba, where I met a fellow traveler on the bus who had uterine cancer. We spend a lot of time talking about her life, and then I started to ask her questions about her death, what if this disease that she had killed her. It got me thinking a lot about how we die societally. This is one of the first times that she had had the opportunity to delve into questions about her death because nobody in her life was willing to talk to her about it.
They would shun the conversation and tell her to focus instead on healing and getting better as a form of existential gaslighting, pretending that this massive thing wasn't happening to her, made me really sad for her and for us as society as a whole being as it's the only guarantee that we all have in life.
Not long after that time in Cuba, where I was pretty clear that this is the work I wanted to do to support people to prepare for death, my brother-in-law, my older sister's husband, became ill. Four months later, I went to New York where they were and I spent the last two months of his life supporting them through his death.
That's where I learned the work and learned how desperately poor our medical care system is when it comes to support people who are dying, and realized that there must be alternatives to this work. That's how I found out about death doula, is by doing it, being one myself, and then learning how to do it after the fact.
Melissa Harris-Perry: Alua, that language you just used, you've said it swiftly but I don't want to go past it that swiftly, existential gaslighting, can you delve a little bit deeper there for me?
Alua Arthur: Sure. What I mean by that is this idea, this big societal secret we're living under that says, we're not going to die and just focus on living, focus on health, focus on getting better. Where when we talk about cancer, we often use language about battle. When somebody won their fight against cancer, somebody lost their battle. They're survivors, they're warriors. Whereas all that's happening, is that the body is simply responding to treatment or not responding to treatment.
With cancer, bodies often don't respond to treatment, which means it's a solid possibility that somebody might die from the disease. When discussing diseases, discussing serious illness with folks, we need to leave space for them to also discuss their death, because focusing purely on life does not allow them space to be in this great big existential question, what am I doing here? What is this life about? What happens if this disease kills me? That's where the gaslighting comes in, is because we try to steer people's focus away from death and just toward life, which is simply not true.
I think when we speak of language of loss, I like to think of it that's what we have lost, I've lost somebody I loved, but the person didn't lose a battle. The person didn't lose. When framing illness in those terms, it makes winners and losers out of people that we love. It creates a system whereby people who fight hard are the ones that live, so what are we saying about the ones that eventually die from disease, that's it's not a failure in any right? We haven't lost the battle, what we did was our bodies did not respond well to treatment and we died. We demonize death by making it as somebody lost to death.
Joél Anthony: My personal belief is that we have to earn our right to die. By that, I mean, we're here for a purpose, and until that purpose is fulfilled, whether it be through an accident, through a sickness, unfortunately, some people succeed at taking their lives. We have to earn that right. It's not something that should be demonized because a person has passed away. I honestly believe that the way that we view death and dying and engage with death and dying depends totally on which the lens that we view life from. There's so many different factors that contribute to those lenses.
Melissa Harris-Perry: I think I'll never forget in my own life, 2014. In that year, I had three losses back to back and ended up attending three funerals within five days, including my brother-in-law, who died far too young and left very young children behind, a very dear friend who seems to have died by suicide. Then Dr. Maya Angelo, who had lived a full and complete and extraordinary life. Each of those ceremonies were so different, what the grief looked and felt like. Our sense as a community. In fact, by the time I went to the third and final, which was Dr. Angelou's, it was a celebration. It was an enthusiastic embrace of what it meant to have been little Black girl who grew up in poverty but live to be Maya Angelou, something very different than how we felt at the other two homegoing.
I'd like to, again, also offer to both of you a way of maybe talking about for those of us who are left behind, for the living who are walking through the process of both preparation for death, and then sometimes having to deal with death that was not prepared for, how we might approach the ceremonies, the homegoings, the celebrations at the end.
Joél Anthony: I often tell people that funerals are not for the dead, they're the better gone, and whatever your spiritual or cultural or religious beliefs may be about what happens after we pass away, the fact is, that person is no longer here in this room with us to be a part of that service.
I think when attending services, it's truly about honoring your relationship in the role that that person or thing because grief is not limited to a person passing away, and oftentimes we talk about grief as though it's limited to a death of a person, but whatever that thing is, a relationship, a job, and yourself, in some cases, it's about honoring what that thing or person meant to you, and approaching that celebration of life or that funeral or that home going from that perspective.
Alua Arthur: I think it also often has a lot to do with how we perceive the death, and whether or not we have found significant value in the last that somebody lived or the way that they died, to celebrate, as opposed to the sadness. You talked about your brother-in-law, and I'm sorry to hear that, I know that brother-in-law, grief is real. My brother-in-law also died, he died at 43. Similarly, there was conversation about his life was cut short, or he died young, or he had his whole life ahead of him. Whereas when older people die, we celebrate their long lives and we can feel a lot more gratitude for all the time that they got to be here.
Overlooking the fact that death can come for any one of us at any time, and the grief that we might feel at a young person's death is more valid, or greater than the grief that we might feel when no person dies, but yet, we can celebrate a long life, we can cheer for it like you did with Dr. Angelo, which I'm so grateful in all that you're able to attend, because that is certainly a life that we all could have celebrated. I think it doesn't make the pain of the loss any less significant.
Melissa Harris-Perry: Joél, given that you are a licensed funeral director, for all of what death is, as an emotional, as a health, as a human experience, it is also an industry. It seems to me it's an industry that has also been quite racialized, that we think of like churches being the most segregated hour but perhaps among the most segregated moments in our lives, is that moment of death. Talk to me a little bit about race and the death industry.
Joél Anthony: Let's just start with deathcare education. Deathcare education, as it relates to our industry, is completely segregated and not completely exclusive of conversations and education about caring for Black and other communities. There's no conversation in deathcare education about the care of our hair, our skin, and even the types of loss or loss that our communities are experiencing.
Being a licensed professional, I've worked in environments where conversation about Black dissidents has been racist and disrespectful in caring for families. Simply put, we're not taught in mortuary school how to care for different cultures. We're taught how to care for white families, how to perform Catholic services, how to perform Christian services, but there's really no conversation about anything else.
As a professional, showing up in different spaces as myself as a Black woman with natural hair being plus size, it's almost like my presence has been tolerated to a certain extent.
Alua Arthur: I'm so grateful to hear you say that, while it's so heartbreaking. That extends even into how we care for our dying. At Going with Grace, we teach death through us. We focus on the unique lived experience of each individual because when we are helping somebody die, when we're supporting somebody through death, we are supporting them in wrapping up the totality of their unique lived experience, which means we're looking at all the intersections of their identities. The person that they were, which requires us to consider their race also, in addition to gender, sexual orientation, body size, ability, et cetera.
I've heard several leaders of prominent [unintelligible 00:13:53] training organizations and death care organizations say very clearly that they do not believe that race matters and that we care for people as they're dying, which could not be further from the truth. Doing so, the race is a big portion of our identity, which is the direct opposite of what we're trying to do when we're supporting people through death, that we must look at all parts of [unintelligible 00:14:12] person is my lived experience, greatly differ some that of a white man, which means that my death is also going to be different. That's what we're up to, is death through as is honoring that lived experience so we can support it through into death.
Melissa Harris-Perry: Joél, I think of my elders who passed, whatever else they were not clear about, about their end-of-life decision making, they were very clear about being handled, only that their bodies, their remains would only be handled after that final transition by a Black funeral home.
Joél Anthony: 100%. Historically, just think about how we've been treated, like Alua said, in health care systems and through experiments throughout history that we're all familiar with. The last thing that we're able to basically take autonomy over in this life is how our bodies will be treated when we die. Even as a death care professional, I want my body taken care of by people that look like me, that share cultural similarities, that understand what my needs are for my body and the way that I will be presented back to my loved ones. I can agree 100% with those feelings. It's sad to say that in 2022, this is a conversation that we're still having, but it is, and that reality is real. The segregation and the separation and the exclusion does not end in death.
Melissa Harris-Perry: Alua, I'm also wondering if you can talk with us a bit about the ways that COVID-19 and its particularly deadly impact in Black communities has affected maybe the ways that we're talking about and engaging with death as Black folk.
Alua Arthur: I think we all watch in horror as the death tolls climbed, but I, and I say the Black community watched in particular horror, as we noticed how fast they were outpacing the death of white folks. Also thinking about all the societal impacts that make it so. Folks are real quick to point to eating habits, or how we care for our bodies, et cetera, as an indication of those comorbidities that ended up killing a lot more Black people.
For many of us, I think also an opportunity to say, "Okay, living Black in America has its own set of challenges that don't necessarily look just like our eating choices, but also the daily stress that we're encountering in the workplace, walking outside, having to make myself small, just so I can feel safe, and so I don't get killed. There's the inherent stress that comes with being Black in America that I think was reflected in the number of COVID-19 deaths, which meant that many of us started thinking more about the way that we were living, the stressors that we were under. I'd like to think started paying attention to how those stressors are just really impacting our health.
Melissa Harris-Perry: Joél, I'm wondering again, particularly when you are working with families, what are some of the things that you encounter in terms of, for example, the surprise that family or community members may have about final plans that were not made? In part because I do think existential gaslighting is both something that happens to us and that we seem frequently to do to ourselves, this sense that we don't need to make these plans. I'm wondering, when you are helping families to manage the after-death preparations and all of that, what kinds of pieces can you tell us we need to maybe be paying more attention to?
Joél Anthony: Sure. I'm going to answer that from two perspectives. I'm going to answer it from what we call the [unintelligible 00:18:01] perspective, which is when someone has passed away, and we are faced with having to make those decisions in the moment, and then from the perspective of the pre-planning aspect, where we get to make those decisions for ourselves ahead of time.
From the [unintelligible 00:18:16] perspective, a lot of people start making decisions as soon as someone passes away. A lot of people don't know that you can, and it is okay for you to collect yourself, collect support, and say I'm not ready to make decisions when you contact a funeral home. A lot of people think that they just have to come in, choose a casket, choose a method of disposition, choose what the person is going to wear, all at one time, and you don't. It's okay to say, "I just need a moment." If you haven't already, do some research and really think about my options. If a professional is pressuring you to make those decisions on the spot, you have the right to go to another facility where you feel comfortable. You have the right to say, "You know what, I'm not comfortable working with you. I prefer to take my loved one elsewhere."
You also have multiple options other than cremation, or embalming. There are things that you can do that don't necessarily require you to be embalmed, but you can still be viewed by your family. Even if you are cremated, you don't just have to go on what people call the mantel and sit in the living room looking at everyone from the mantel. There are multiple alternatives that are available for cremated remains.
From the pre-planning perspective, everyone seems to look at it from a financial standpoint, but there's a difference between pre-planning and pre-funding. Pre-planning is collecting those small details, writing out the information that you want in your obituary if you're not writing your obituary in its entirety, selecting your musical selections, choosing the casket or colors that you'd like to have, the flowers that you'd like to have, making those requests known to your family and going a step further with estate planning. If you are in a position to do the pre-funding, you don't have to take that money to a funeral home and say, hey, this is this money. In a lot of states, that's actually illegal. You need to consider that pre-planning is done through either an insurance policy or a trust.
Melissa Harris-Perry: As we are thinking about preparing for our death, for those of us who have an opportunity to actually prepare where it doesn't come as surprise, what are, or if we're helping our loved ones who are on their journey towards the final transitions, what are some of the things that we have not been doing that we could be doing to make this process more thoughtful, and allowing ourselves to engage with death and dying rather than keep pushing it away.
Alua Arthur: Oh, sweet Jesus. I wouldn't even know where to begin. There's so many things. Like Joél said, starting to have those conversations early is key. It's important to think about what we want done with our body, our services, but let's also think about what kind of care we want to receive at the end of life. COVID also showed us that we weren't very well educated on CPR or ventilators or what happens when people go into the hospital seriously ill. Let's think about what type of CPR we might want, what type of life support measures do we want. Who do we want to make our decisions for us in the event that we can't. Let's consider the type of care we want to receive. What happens with our sentimental possessions? Who do we want to enjoy them when we can't any longer? Let's consider our dependence, our pets, if possible. Let's gather our important information and documents, put those in one place. Let's write out what we value while we were living. Let's collect our marriage certificates, death certificates, social security cards, passports, deeds, trust, put all those in one place and tell somebody that you're doing this work beforehand.
These are instrumental and vital conversations that we're not having that we really need to have. I'd say Black folks at the premium, let's gather around a table, talk to the elders in our community. Let's start having these conversations now because it's too late when somebody dies then you've got grief on top of grief. You've got the bureaucratic grief of trying to get everything figured out, and then you've got the emotional grief that you've got to carry as well. Better if we start early.
Melissa Harris-Perry: Joél Simone Anthony is a licensed funeral director, death care educator, embalmer, insurance agent, and Sacred Grief Practitioner. Alua Arthur is a death doula and founder of Going With Grace. Thank you both for being here.
Joél Anthony: Thank you.
Alua Arthur: Thank you so much, Melissa.
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